Life with autism, breast cancer and other adventures

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Monthly Archives: September 2015

In some ways, our lives have been on pause since September 30, 2003. That’s the day that we received Elliott’s autism diagnosis, and every year around now, I feel a bit unsettled and emotional. It’s kind of like wearing a heavy coat on a warm day, and wishing you could throw it off, but not being able to. So far, I’ve only been able to unzip it. It’s burdensome, it’s uncomfortable, and I worry that it’s visible to everyone, but in time, it will once again become a sweater, and the heavy coat will be tucked away in a closet for a while.

This year, my coat has been bulkier than usual, and I think that’s because I’ve been a bit blue since early spring. Nothing monumental about that time, it’s just when I began to take note of it. Each of the kiddos had been having challenges of some sort last academic year, and I suddenly felt not at all the proactive, deal with challenges before they become challenges kind of ABA Mom I had been trained to be. Rather, Tom & I were staying up way too late, trying to put out one fire or another, and always feeling like we were reactive rather than proactive. It’s an icky feeling really. Plus, even though some (if not most) of the issues were just general stuff that comes up for most kids from time to time, it felt compounded and overwhelming when it was all lumped together, and some days I just didn’t even know where to start.

True, all 3 of our offspring had their own unique episodes of ugliness last year, but the E man’s challenges were often epic compared to his siblings. Elliott experienced 2 years of ever increasing anxiety and academic challenge in middle school. It got to the point where I would drop him off, and expect a phone call from his school within 30 minutes. We tried every tool in our toolbox, and collaborated with some compassionate and caring educators, doctors & other professionals, but it was not meant to be. In his own way, he told us it wasn’t working. Sadly, it just took me a long time to be quiet and listen instead of trying in desperation to make something work.

So, when Henry and Ada had their own little bumps in the road, I felt so overwhelmed by the enormity of E’s issues that I realized I had missed some glaring signals from each of them that could have helped deal with things earlier. Then it became that awful revolving parental regret thing that never really accomplishes anything except increased tension and ickiness. (I promise this won’t be as dismal as this all the way through – hang with me). Thinking to myself that if only E’s difficulties were reduced, that I would have more time and focus for H & A, and realizing that Tom and I had emptied and shaken our Elliott toolbox, and were out of ideas, despite our home life getting uglier and less harmonious by the day.

I’m guessing by this point you can tell the heavy coat was on – heck, maybe it was 2 coats for a while combined with a giant dorky fur hat. You know the type – exceptionally unattractive. I pulled back from most outside commitments, and said no to almost everything social in order to put every ounce of energy into the trio. Yes, I can now see that was a crappy decision that only made me less pleasant to be around and likely prolonged some of our challenges, but it’s just easier to see that in retrospect.

So much about autism for me has been isolating anyway, but all of this just made it worse. I couldn’t see an end to the ugliness, and I felt bored complaining or sharing crummy stuff all the time. And so I just let myself feel sad for a while, and soon enough things started to feel better. This is a lesson I learned a long time ago about my journey as an Autism mom – it is better for me to allow myself to walk straight through the painful feelings, lost hope, unsuccessful plans, overwhelming sadness about what won’t be rather than trying to step around them or avoid them. It’s icky – but there is also a sense of cleansing from walking head-on through the ugliness and getting to the other side. It gives me perspective and compassion for the struggles we all face in new ways, and it’s humbling.

We spent a lot of time with a variety of family over the summer, but not much else, and that was ok. While family stuff has its own funkiness here and there, my sister and I had no giant blow-ups (i.e. our chicken fiasco), and our offspring were kind of sweet together in new ways. Henry’s man voice made everything kind of amusing, Nik was enjoying fascinating conversations with Ada and doing electronic junk with H, and Elliott and Xander who both feel strongly about controlling lots of aspects of their world now and then experienced peace and harmony and even a few smiles.

E transferred to a smaller, more structured school and almost immediately began having more success. During summer school, his teacher emailed me week one to say he was a completely new person, and he had never seen him so relaxed, social or focused. Even when Ada would have some sort of dramatic moment at home, E would often be the voice of reason which would cause all of us to look quizzically at one another to make sure we weren’t hearing things. Sure, he had his moments where I thought he was going to have a giant meltdown, but then he would catch himself, and apologize for overreacting or sometimes go out for a bike ride to shake it off.

No, not everything is better, but a lot of things are. Some days he still laughs inappropriately about death and that hurts feelings, and he still finds joy in referring to teachers and administrators by their first names rather than their proper titles. Some days his focus is not great, but some days just blow me away with how articulate and perceptive he’s become.

On one occasion, we were asked to share our experiences at a fundraising gala to benefit the summer camp the kids have attended for years. I gave a short speech about our family, and all the ways that camp has made a difference for our kids and our family. I’m not a talented public speaker (this is putting it mildly), and because my heavy coat happened to be on that day, I didn’t “connect” with the audience and just kept tearing up through every other sentence. It was pure ugly actually. After I finished, I sat down, and Elliott looked at me and said “Mom, why do you cry whenever you talk about my diagnosis?” Wow – that threw me! I was so taken off guard because he has never asked me anything like that before, and I didn’t want to blow the opportunity to celebrate that. So I gave him a hug and told him that I was not sad about autism, but I was sad that anything was going to make his life more challenging because I loved him. He thought about it a minute, and said “Ok. You promised me ice cream, can we go to DQ?” It was beautiful, funky, and pure Elliott in every way.

Ada is struggling a bit more in some ways, and her sensory challenges seem bigger to me now than they have before. But Tom and I can’t decide if it’s because they really are increased, or if it’s because she’s able to articulate them so much better all of a sudden, which helps us know how to help her. Her confidence has grown and she’s chattier with teachers and peers, but she’s also all of a sudden really picky about what she eats. She remains strong willed, a bit sassy, and has fascinating ideas for pairing articles of clothing that mostly make me smile. She tried to resign from 3rd grade yesterday because it is “inappropriate”, but by this morning, she was excited to return. In short, she’s awesome.

H has grown tall this summer, and his man voice is now firmly established – no fluctuating. He tends to be a bit oily, and rarely smiles in photos, but is also a lot more comfortable in his own skin. He’s branching out in some new social circles, but hanging on to some elementary dude connections as well. He’s been talking with Tom and me a lot more, and asking thought provoking questions that remind us this parenting gig is often serious business! We do our best, and I still give him grief about appearing on page 1 of his middle school yearbook next to a lovely young lady that he claims he doesn’t know. In truth, 2 of his buddies were in the photo as well, and word is they don’t know her either. It’s kind of too easy to make him squirm.

As for Elliott, he continues to slowly but steadily amaze us. The puberty/middle school thing knocked us on our backsides more than we’d care to admit, but we haven’t had to live it like him – he hasn’t had an easy time of it for sure. He’s asking to do tutoring, watching the news every morning, and making academic progress at an increasing rate because he wants to. Best of all, it’s not just us that notices – his physicians, his educational team, his grandparents and extended families all over the place have mentioned how different he seems – more social, more engaged in the world around him, more able to share a conversation or something funny that he notices. It’s not every day, but it’s a lot of days of really great stuff.

So, my heavy coat is shrinking despite inching ever closer to that dorky diagnosis anniversary date. I’m still a bit shaky, worried that everything might fall apart again tomorrow. But, slowly, I’m beginning to branch out again, want to see old friends and volunteer my time where I hope I can help make a difference. Last weekend, we decided to paint our garage, and made it a family project. We haven’t really done anything to this house since autism started hanging out, and there is much updating that we need to tackle. Ada helped as much as she could, but she was dealing with an awful cold, and then got dramatic and went to bed. But around 10 p.m. when we were all exhausted, it was completely dark, and in the past things would have been crazy ugly, I stood back and watched E & H work together, laugh, kid around with Dad who was a bit gassy, and power through to the end. At one point E said “this is really fun” to which Henry said something empowering like “you missed a spot, Elliott.” It was so natural and easy – I hope I don’t forget that moment because this is one of those little things that kind of means everything.

Oh – one last thing. There is a reason that Elliott is in a better place these days – its medical marijuana. 49 patients were registered on the Minnesota Cannabis Registry as of July 1st when it became legal in our state. Elliott’s appointment was at 4 p.m. on July 1st. More about that next time . . .